Leprosy Mailing List – January 26, 2020
Ref.: (LML) Leprosy Eponym: need for a medical name
From: Joel Almeida, London and Mumbai
Dear Pieter & colleagues,
Thanks to Drs. Butlin, Lockwood, Gajete & Ajit P for their thoughtful contributions on this topic.
The distinction between paucibacillary and multibacillary seems useful because patients with PB disease are generally non-infectious even before treatment. Those with a well-demarcated single smear-negative anaesthetic patch are frequent among newly detected patients in door--to-door surveys by expert clinicians. Such patients have a high probability of healing even without specific treatment. They need not have the same label as patients with MB disease.
The word leprosy is not only a medical term. It is also part of the English language, just as are plague or cancer. In lay usage these terms have very little medical content. For example, people talk of the "cancer of corruption" or being "plagued by inefficiency". A Google search for the "definition of leprosy" reveals the following:
"1.
a contagious disease that affects the skin, mucous membranes, and nerves, causing discoloration and lumps on the skin and, in severe cases, disfigurement and deformities. Leprosy is now mainly confined to tropical Africa and Asia.
2.
a state of corruption or decay."
Definition 2 reflects common usage, not dictated by any central agency. Lay people have been using the terms cancer, plague and leprosy as part of the English language (and perhaps other languages). It seems easier for us professionals to switch terminology than for the English language to be changed. Changing definition 2 would involve changing the English language. That might prove more difficult than we would like.
When a patient is newly diagnosed, they might have a blend of definitions 1 and 2 in their minds, perhaps with undue emphasis on definition 2. The important words missing from definition 1 are "treatable", "curable", "bacterial", "to which most people are naturally immune" and "Brazil". There is apparently room for more intensive public education to get definition 1 right.
What about medical terminology? Skin and nerves are important loci of bacilli. So are mucous membranes. A nasal speculum and hand torch to examine the surface of the inferior turbinates can reveal nodules when no other signs of LL disease are clearly apparent.(1) That paper states: "millions of bacilli are discharged daily in nasal secretions from lepromatous patients with active and, importantly, early disease. When these millions of bacilli are being discharged from the nose the patients may well be unaware that they have leprosy and clinically they have insignificant skin lesions." In that study, patients with recurrent LL disease were the most likely to show dense globi in nasal discharges, more so than even newly diagnosed patients. LL patients do not always have clearly thickened nerves. In Salaunikhurd (India), multiple patients with LL disease in one family escaped diagnosis despite door-to-door active case finding, although the examining personnel were not experts. This led to a rapid increase in the new case detection rate from 300/100,000 population/yr to over 1,000/100,000 population/yr. It seems wise to include mucous membranes in any medical description of the disease, and to train front-line staff to include the nasal mucosa in physical examination. Nodules in the nasal mucosa can be the only physical sign of early LL disease.
TB (rather than consumption or phthisis) has come to be used as a name for another mycobacterial disease. HD has a similar ring to TB. Many persons who have experienced HD do not want to be associated with "a state of corruption or decay". Many have been advocating the use of the term HD in preference to alternatives.
In summary:
1. In the English language the word "leprosy" can connote not only a medical condition but also "a state of corruption or decay". Persons affected by the disease often advocate other labels.
2. The English language is determined by common usage rather than central diktat. It is easier for us professionals to switch terminology than for the English language to be changed.
3. PB disease and MB disease have vastly differing pathology, immunology, prognoses and infectiousness.
4. Mucous membranes, especially of the nose, play an important part in the disease and the epidemiology.
PB HD and MB HD are well defined medical terms. Nobody uses them to signify "a state of corruption and decay". With competent case management, each of these pathologies can leave no sequelae at all. While other medical names are being developed, PB HD and MB HD might be considered useful.
Best wishes to all who are striving for non-stigmatising terminology alongside good public education, and to all who are striving for consistent, complete healing with zero sequelae, or at least effective rehabilitation, inclusion, justice and affirmative action.
Joel Almeida
References
1. Davey TF, Rees RJ. The nasal dicharge in leprosy: clinical and bacteriological aspects. Lepr Rev. 1974 Jun;45(2):121-34.
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